Severe ME: I had to fight the people supposed to help me

young girl in eye mask lying in darkened room

by Sam*

Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says even having a person enter the same room is “unbearable”. Despite having classic ME, she was taken to a psychiatric ward where she was threatened and kept from seeing her family. Here is her story.

In my last few months of primary school I came down with a particularly aggressive form of what I thought was tonsillitis. The throat pain gradually faded, but the symptoms were so severe I spent a lot of time bedridden.

My first few days of high school were spent with my head on the desk in near unbearable neck pain, coupled with crippling headaches. More and more symptoms started cropping up. Several months after that episode I had full blown fibromyalgia, resulting in constant pain in my neck, extreme exhaustion, and I felt as if I was in a dream. Physical therapy didn’t help, nothing relieved my pain, including pain medication.

Over the next few years the neck pain subsided, and almost every single symptom in the ICC criteria for ME took its place. Year after year things got worse. As the countdown to the new year approached, every year I vowed to have a better one.

As I had experienced this for so long, I had no clue that this wasn’t a normal experience for a child until it got to the later years of high school. My years were spent in disoriented exhaustion that permeated every cell, I became disorganised, started to lose vision upon standing, I would stagger into English exams not having read a single word of the designated books. It felt like gravity had increased, but it only applied to me.

Not knowing what was wrong with me, I pushed and pushed. By some miracle I scarcely missed a single day of school. I collapsed into bed each night unable to do anything except cry.

By this point I had classic ME to the core with every co-condition to boot. My mother expressed sympathy but ignored everything I said when I tried to explain something was wrong. Those years were difficult at best and living hell at worst.

A diagnosis

I discussed things with my psychologist. She closed her folder and informed me that she was going to close my case, as aside from my anxiety she felt nothing was mentally wrong. “Then why am I so tired all the time?”, I asked. Her brow furrowed and she shook her head. “I think you had better see a paediatrician.” Two months before I went in to see her, I finally started to realise something was wrong. I was like a useless ragdoll after any exertion. I started searching, and still remember the moments my eyes skimmed across the criteria. I found it. This was it – chronic fatigue syndrome. This was my life for the past few years. The paediatrician appointment scarcely mattered – I knew what she was going to tell me.

May 2017, I can still remember sitting in the office. I was so classic it didn’t take her long to determine what was wrong. Half an hour in she stated, “the tonsillitis was glandular fever, you have chronic fatigue syndrome. It’s hard to live with but that’s really it.”

I started crying with happiness. Not the expected reaction, but I finally knew what was wrong with me, and it had a name. It evidently meant little, as I went back to school the next period. I collapsed into my best friend’s arms and told her. “Oh my god, that’s really it?” she said. I nodded.

I don’t think I realised the severity of what I had, because I had already mentally overpowered myself with determination to continue.

Harm in the name ‘chronic fatigue syndrome’

Probably the worst part of combining CFS and ME together is the name threw me into a state of blissful ignorance. Of course I could keep on, all I had was “chronic fatigue syndrome.” It didn’t matter that I couldn’t take showers standing up, or that by the end of the school day I couldn’t see the teacher in front of me. It was just chronic fatigue syndrome.I did everything I could to help myself. I had cut out gluten, dairy, and all unhealthy foods, every chemical known to man, my skincare products were all organic and I was a 15 year old health guru. My friends would bring healthy lunches to school, inspired my mine, and ask me for the healthiest menu choices. I tried every treatment YouTube had, I begged my mum for ashwagandha tablets and supplements I couldn’t pronounce, but nothing made the slightest bit of miniscule difference, although at least they didn’t make me worse.

That changed rapidly when I trudged into my new psychologist’s office per my paediatrician’s referral, and she prescribed me CBT and GET. I had some knowledge of this, although not nearly as much as I wish I had. By this point I was almost totally homebound. I thought ‘what the hell’ and attempted GET briefly. Those psychologist’s appointments were the last time I could ever leave the house.

It didn’t end there. Time after time, doctor after doctor let me down and exhibited such immense ignorance to my condition it was scarcely believable. My GP exclaimed “What? No, she doesn’t! Oh well, if she does, don’t worry about that. It’ll go away on its own”. The hospital doctor, when I explained I couldn’t leave the house due to fatigue not anxiety looked at me in mock horror and said, “but how can you SAY that?”.

I had to become my own advocate. I had to fight the people that were supposed to help me, the ones who were meant to offer me comfort who had instilled in me fear instead.  The sicker I grew the worse it got.

I began to descend into very severe ME, probably partly because of how I was continuing to exert to extreme lengths. At 16 years old the disease left me dependant on 24/7 care, intolerant to all stimulus, profoundly symptomatic, and unable to move or speak, so much so that a person entering the room became unbearable.

One of the worst things about being a teenager and going through this disease has without a doubt been the downright disgusting, unwarranted treatment. I have spent night after night drafting emails to doctors at four in the morning despite being in a state of near paralysis due to my severity trying to inform them my disease is neurological. I have had referral after referral to CBT and GET.

Mental health ward

Nothing comes even remotely close to the experience I went through in 2018, when after being referred to get more tests, I was taken to hospital. By this point I was very severe. I was 100% bedridden, unable to stand or speak at all, and extremely sensitive to the slightest sound, noise or vibration. I did not want to go, for I knew exactly what would happen. I was correct – I was carried out on a bed and upon arrival I was fully paralysed due to the journey. All I could do was write a note to the nurse, whom upon reading what my diagnosis asked, “you’re under management of your doctor, yes? Is that a psychiatrist?”.

A new doctor arrived and I was forced into a wheelchair and taken to a psych ward. I couldn’t sit up, and it took several people to hold me as they refused to transport me by any other means. I was informed that this was a mental health ward and I was medically cleared. As it was night time my family were kicked out.

I was alone in that ward, barely conscious but still aware of what was happening. I knew the stories, but it is so different when it is you and sympathy becomes empathy for all the people that have experienced those same moments.

The next morning my headphones and eye mask were removed and the nurse threatened to take away the blanket I was using to cover my eyes. I was relying on mouthing to communicate and trying to explain. At one point the nurse became fed up and informed me she wasn’t going to “put up with my shit”.

I was told that I wasn’t allowed my phone or to see my family if I didn’t cooperate and that I was just “making it harder for myself”. They refused to help me go to the bathroom, instead I was taken on a chair and force showered, unable to move. I remember focusing on trying to breathe and just cope, somehow try to endure what was happening.  After that I was dragged into a chair and evaluated by a psychiatrist. Because I couldn’t sit up in the chair, they told my family to go back out and not come in to see me if I wasn’t listening.

I hugged and squeezed my mother, trying to remember the sensation and absorb that moment, because I knew that was very likely the last time I was going to see her.

I felt I was suffocating and I was in immense pain and trying to communicate as best I could with the psychiatrist as he asked me questions. The level of suffering of very severe sufferers of this disease experience is unimaginable, and my words fall so short. He appeared confused as to why they had brought me there, and when they thanked me for talking with them, the registrar said “it must’ve been hard” to which the psychiatrist replied, “that’s an understatement”.

I remember the contrast of the blue of his eyes against the white of the room when he came in shortly later to discharge me.

I have never regained the health I lost, but that is no surprise.

Speaking out

I want people to know that this happened in Australia, in the middle of one of the most developed cities in the world in 2018. It is still happening. And although it is undoubtedly painful to remember, the actions of others do not define us, nor do their brutality, and it is important not to protect it by not speaking about it, discussing it and delivering the message that people are being treated horrifically.

6 thoughts on “Severe ME: I had to fight the people supposed to help me

  1. I am so sorry you experienced this degrading and harmful episode in an Australian hospital. You are so courageous to share this with us. My son also became his own advocate against the GP and specialist insisting he push on with GET. I am still alarmed by the ignorance and inability to listen from health professionals. I recently met a GP who confessed that she did not know much at all about CF let alone ME. I wish you well. Thank you. Penny.

  2. Thank you “Sam” for telling your story. You are really brave. It is difficult for anyone with the condition to speak up let alone someone so young.

    As l have had it at the chronic stage for 31 years, l also experienced disbelief and even abusive behaviour. I was told to do light army drill exercises but l was lucky to recover from that fairly quickly. I find it appalling you where prescribed GET and it happened in recent years.

  3. I am appalled at how you have been treated, though not entirely surprised. My symptoms are not anywhere near as severe as yours, but I did go through a time when I was housebound, when the lights in the ER sent my symptoms through the roof. I remember being treated deplorably by the doctors. My body was falling apart, I was terrified, and the very people who I was taught were there to help me were treating me with hostility and even disgust. I pray that your body will eventually recover from these horrific events. My prayers are with you brave girl ❤.

  4. I am speechless on how you were treated with these programs in place, GET and CBT.

    As well the hospital staff should be caring and listened to your medical needs.

    You sound like such a bright young lady and u fortunately have triggered with ME FM at such a young age. My heart goes out to being a teenager and suffering with such a severe form of ME!

    Thank you for speaking out as well you are becoming a great advocate for ME Awareness.

    Sending you love from far away.😘
    Much love,
    Kimberly Krause

  5. Hi Sam, thank you for sharing your story. You are braver and stronger than 99% of us. It is appalling to hear how our world responds to us, at times it boggles the mind. I don’t know you but I just want to say I’m so proud of you. Your story is so similar to my own.

    I wanted to reach out and see if you’ve heard about certain ME/CFS and fibro patients getting great relief from doctors who have found spinal/brain abnormalities. In my own quest for answers I recently discovered this and am starting to pursue this path on my own. Your mention of neck pain and headache made me think you could be one of those who has this problem, for which there seems to be hope!

    Here is one of many articles describing these patient’s experience and improvements after surgery. https://www.ncbi.nlm.nih.gov/m/pubmed/29391028/
    I’d also look into Dr. Michael Rosner in Hendersonville, NC.

    Please reach out to me if you want more info on this!

    Sending gentle, warm hugs and love your way friend.

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